Making the most of your hospital experience

Navigating the unknowns of life post stroke

Hey everyone, how’s it going?

To kick off the first blog of 2018, I want share how to navigate the healthcare system and use it to reach your goals. It’s a topic I've been meaning to write about for a long time and it's very dear to my heart.

When I first had my stroke six years ago, support communities and resources such ‘My Stroke Journey’ and ‘EnableMe’ did not exist, and less was known about how to treat stroke and recovery – especially for younger patients.

At that time many (and for some now) people were left in the dark, with a lack of certainty of what actually works in stroke recovery. Because of this they were left in the dark with no roadmap for their recovery. I remember I was told that the brain was “plastic”, there was a plateau, but I was given no actual concrete information on how and why I had to do certain exercises.

This put limits on my recovery as informed action was limited and I had to find my own way with family support. For many this may even limit recovery to the short window of treatment they receive in hospital.

Treatment in hospital was, and still is for many cut short as the hospitals primary interest is to discharge patients when they are medically stable, rather than ready and armed with what they need to tackle recovery. There seems to be an ongoing battle as a therapist’ definition of medically stable may be very different to a doctors.

I thought I would share a thing or two about how to use the healthcare system to your own gain and to bust through some of those limits.

Allied health professionals are your best friends

Throughout your stroke journey it’s more than likely you’ll come across many different healthcare professionals, each with a different view on how to best help you reach your goals.

You’ll find from nearly every physio, nurse, doctor, occupational therapist, or ‘speechie’ a golden nugget of information that you can apply to your recovery. Looking back, a lot of the things I’ve written about or applied to my recovery stemmed from my time spent with healthcare professionals treating me in hospital.

If you get really into it you'll find that you actually start thinking like a therapist, and you may eventually ‘own’ your recovery as you know exactly what to do and how to do it. Sessions with therapists will no longer be a patient therapist relationship, but more like two therapists collaborating together on the same patient.

Identify what works and doesn't – quickly!

How do you learn best?

Throughout your stroke journey it’s essential that you identify quickly what does and doesn’t work for you. This will help you to have something to fall back on whenever a recovery lull hits and your motivation is low. Think of a great athlete, they’ve discovered what works for them and they never deviated from it, this is what makes them so good.

Develop your own formula of success and build a roadmap for your brain recovery. By understanding and owning it, you will have the confidence and understanding to help to push through even if you have thousands of reasons to quit.

For me, I’ve found to remain motivated, I need an in-depth understanding of how the exercises I’m doing work, and how the brain uses these exercises to fuel recovery.

Whenever I change my exercises, I ask a handful of trusted professionals so that I gain an understanding of why I’m doing them and why they believe they’ll work. This helps me to ascertain whether the exercises are working and how to get the most of any ‘action’.

It’s important to identify what works for you in regards to any limitations you might be experiencing. Being a hard task master on myself, I’ve recognised that I can get to engrossed in the process of ‘doing’ and forget to rest, which I pay for with fatigue. I have learned to I make sure I take a break every 40-50 minutes so my brain doesn’t fry its circuits.

Remember it’s not a competition with your pre-stroke self, it’s about how you manage your new barriers to reach your new normal. I have found prioritising your end goal and not the means of getting there is really helpful.

‎Neuroplasticity and reversing a car

What does neuroplasticity actually mean?

It’s inevitable that you’ve heard this term tossed around by lots of healthcare professionals during your time in hospital. This ‘word’ is rarely supported with information that you can understand at that time or how it applies to you.

Here is how I explained it to myself.

Think of how your brain relearns new skills such as reversing a car. When you first learn you may find it’s really difficult to get used to which way is left or right, as you’re used to facing forward.

Finally after a lot of practice, and with the right conditions you experience an ‘a-ha moment’ and you get a sense of how the car turns. Like a bolt of lightning the experience gets screwed into your memory. Your brain has created a blueprint which you build on as you challenge yourself to reverse in different conditions and under different stressors.

Our brains capacity to be ‘plastic’ is largely based on experiences. After a stroke our brains have lost the memory of what it felt like to move, feel, and do activities. In order to recover you need to give your brain the ‘experience’ of doing these things again and again and again, in different ways and under different conditions.

Think of exercising after stroke like athletes refining their skills before the Olympics. They practise daily, repeating activities in different conditions and imagining themselves winning. We can apply that to our recovery, by continuing to provide the brain with new experiences under different conditions to re-learn skills.

In order to relearn tasks the brain needs to be exposed to the how to, what it feels like and what it looks like. This helps to create a blueprint that is constantly being adapted or improved by new experiences.

Best of luck with your recovery,

William